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@Wagolynn - Yes, as soon as I hit level 5 I started seeing a renal dietician. As I said, told about the sodium, phosphorus and potassium, all of which are still in a good range incidentally. I have been avoiding sodium since my early thirties when I was first diagnosed with dodgy kidneys.

From what I know this is a common thing for stage 5 all over Australia.

Hi everyone.hope you are all well..not written for ages so I thought I'll post an update.well today I saw my consultant..i had previously had a high creatinine reading.it came down a little on a repeat test.this was all due to an infection.well I had a review with the doctor today.as my gfr is hovering at 20 he has informed me of getting me ready for dialysis and the procedures involved.i wasn't expecting this in the conversation but given the level I guess it's expected..has anyone gone through the next stage?how do they prepare you?till now iv kept going and held on for as long as I could.30yrs to be exact.i am a little worried.iv been told I'll be seen in a separate clinic.we briefly touched on the diaylis and transplant procedure.was informed a live donor is better option.what if there isn't a match or you don't have friends or relatives able to donate?it's all a bit strange..i haven't felt any major symptoms apart from tiredness.can anyone describe how they felt when dialysis was required?i have restricted my diet and don't eat animal protein.my own choice.not been given dietary advice.its just hard when a doctor tells you that this is enivitable..felt disheartened as I'm 40 yrs old and felt this situation has plaugued me through the most valuable years.hope I can get to hear about your experiences..thank you..

Thought I'd mention I got my results for yesterday's appointment and the creatinine has jumped back to 245.really strange as a little over a month ago it was 221..im disappointed as the gfr is back to 19..im not sure what I can do..i thought I'd drunk properly before.i do have a pain in my right side near my waist..not sure if iv pulled a muscle or something else..its all puzzling.

For myself, I have had a 4-year ride where my kidney values went from eGFR ~30 to ~10. Over a long period of time, sadly, decline is almost inevitable once you have reached stage 4/5 CKD. But how fast it happens, and in what form can vary greatly between individuals.

For myself it has been a steady decline over the years, with a couple of "free-fall" periods where it dropped very quickly, and then stopped.After I reached 8% eGFR and was prepared to start dialysis, it suddenly (most likely due to cortisone treatment of stomach inflammation) jumped back up to 12%. Then dropped down to 10% steadily, and then after another cortisone treatment I am now back up to 14%.

Individual measurements can have some uncertainty, because, as you say, infections can affect the values. Also current hydration status. I have been fortunate to have understanding nurses who agreed to blood test me every 2nd week,and during quicker changes once per week. I like to stay updated on my values and to be able to rule out statistical anomalies.

As for side-effects during this period... As the eGFR drops, so has the energy. I can feel deadly tired after lunch, and spend most evenings in a comatose state. Sometimes I manage to rouse myself after a nap, sometimes not. When I was at 8-9% I also felt nauseous very often and was actually looking forward to dialysis. It was especially hard to perform any physical exercise, as it triggered the nausea. After my eGFR bounced back up, the nausea is thankfully rarely occurring. Still tired though. (Doesn't really help with the nightly urinations! always 3-4 times at least per night to disturb sleep)

angie100 wrote:i haven't felt any major symptoms apart from tiredness.can anyone describe how they felt when dialysis was required?i have restricted my diet and don't eat animal protein.my own choice.not been given dietary advice.its just hard when a doctor tells you that this is enivitable..felt disheartened as I'm 40 yrs old and felt this situation has plaugued me through the most valuable years.hope I can get to hear about your experiences..thank you..

Hi angie100,

If you have not been advised to do so, it unwise to start restricting your diet.

The dietary restrictions are in place, on dialysis, because dialysis is not very good at removing Potassium, and Phosphate, which your kidneys normally help to control. These dietary changes do not make any difference to your kidneys. Both Potassium, and Phosphate, are essential to life, and therefore should only be lowered under medical supervision.

If you are in the UK, restricting protein intake is not normally required, the average UK diet does not usually contain excessive protein, as say the American average diet. We must have sufficient protein to help replace worn out cells etc.

If you want to change anything, move toward five-a-day vegetables, or fruit (fruit juice does not count), this will help to improve your general health, and keep you ready for a transplant operation.

Feeling tired is a common symptom of low GFR, along with a tendency toward depression, due to the immune system being below par, we tend to catch more colds etc. and take longer to get rid of them. Feeling tired is much worse if your blood count is low.

Should you feel sick, see your GP, there are many medications which can alleviate this.

Last edited by wagolynn on Thu Mar 16, 2017 2:56 pm, edited 1 time in total.

If you feel sick, see your GP this can be fixed, with many different medicines.

Yes feeling tired is 'normal', but low blood count also makes you feel tired, and is likely with malfunctioning kidneys, so it worth looking into your blood results. Haemoglobin needs to be 100 - 120 g/l, I find that much below 110, and I begin to feel it.

On the night time peeing, I have not found a way of stopping it, but I have reduced it by avoiding drinking tea in the afternoon, I am on dialysis so I cannot drink coffee. If you are a coffee fan, it is worse than tea for encouraging you to pee. I am also on water pills, so I make sure I take the days dose before lunch time.

The problem is, our (sick) kidneys do not respond to a hormone that should reduce kidney output while we are asleep.

Many thanks for your kind reply..ckd at an advanced stage is very unpredictable..my consultant has been monitoring my results and says that the decline has been going on since 2011..he estimates that I'll need replacement kidney dialysis within 5 years..i am worried if the decline is happening at a fast pace..i had tests completed within a month of each other and they do vary..taken from different labs.one was guy's hospital London and the other was my local hospital..i will have to assume the ones in London are the more accurate result.im exactly like you..i do like to keep on track with the latest fluctuations..although scary but at least I know where I stand..its handy you get your tests done frequently..im having my tests repeated in a month.i have noticed for a couple of weeks I'm getting flank pain located near the right kidney..iv just got my urine tested to rule out infection.awaiting results..does this symptom occur at later stages in ckd.till now iv been lucky in the sense if not had really debilitating symptoms.iv been working part time,appetite has been ok..tiredness has been there but not overwhelming.one thing I can relate to is the night time urination..i also get up 3 times..if I'm really tired then a bit less..such a pain as it ruins the pattern of sleep.iv done alot of thinking and feel I need to make the most of what iv got and carry on to the best of my ability..i shall keep in touch and update you..i hope you are feeling well and your function remains stable..

Thank you so much for your response..its making a lot of sense regarding the diet situation..at the present time I feel I must be lacking a lot of essential nutrients.i am on the vegetarian diet but I am certainly not consuming the 5 a day..iv not had any restrictions put in place but I assumed eating any animal protein made it hard for the kidneys to process creatinine..also with potassium I do limit anything that has high content..bananas,oranges etc..i agree with your views about depression..since this news I am feeling rather low.i shall try and make the best of it..im now realising that dialysis is more of reality..im worried about the restrictions this will have on my everyday life..i shall certainly concentrate on my diet from now on as I feel it may help build up my strength.thank you for your advice..shall stay in touch.hope u are well..

Hi angie100,If you want to pursue a vegetarian diet you need to fully understand what you are doing with regard to nutrients.

Until advised otherwise, you can eat potassium rich and phosphate rich foods (in moderation), I assume you are having regular blood tests, if any restrictions are required it will show in your blood results, and they will advise you.Both of them are essential to life so playing with them without understanding can be dangerous. As I mentioned above, these restrictions are usually only used when on dialysis.

Vegetarians, generally have to be carful to get sufficient protein.

In your situation I think I would make sure your kidney team know that you are vegetarian, and I would try asking for help on your diet, they may assign you a dietician before you are on dialysis, that way you should get well informed help on diet.

Hi Angie. This CKD is a bit of a wild ride isn't it? My last egfr result was 19 just yesterday. I've just changed nephrologists as I moved to a different area.

He's an upbeat kind of guy and reckons he'll keep my kidney going for 3 or 4 more years. It seems an improbably long time but I like his confidence. My potassium is high and my haemoglobin is low which I think contributes to my tiredness. So, I do what I'm told by the health professionals and try to keep on keeping on.Seeing as we are at about the same place I challenge you to avoid dialysis/ transplant for longer than I do.

Nice to hear from you..yes we are exactly at the same stage with our gfr..i hope we can both maintain what we have got as long as possible..i have been a bit down recently with this development but I realise you have to deal with the situation.i had my blood tests repeated and one of them was out of range.the ESR..it was 100..i shall have it taken again..i.have had this ache near my waist and thought it was flank pain..this is a marker for inflammation.i do not have an infection now or any fever,cold symptoms..my calcium levels have decreased slightly to 1.98..so this is a new tension in my head..i have an autoimmune condition but my nephrologist feels it's not connected as my other compliment levels are ok.the other blood counts wbc are within range..very confused and little scared..you read stuff in Google and it messed with your mind..anyone been in a similar situation?I usually have a higher esr but not that high..yes notso am up for the challenge and hope we can offer each other support..Take care

Hi Angie, newbie here. I came on to look for advice on water retention but saw your post and had to reply. I've reached 19 too. It's not 19 every time, the odd 21, but 19 more often than not. I'm 38 and every two/three months when I see my consultant I have that reality check that I'm not a normal healthy woman. The usual dialysis and transplant chat brings me down. The only symptom I have had to remind me something is wrong is the gout I've suffered on and off for the past 9 years. I also get frequent UTIs which isn't fun. That's until recently when the skin on my arms and chest is dry and extremely itchy. I put it down to developing a perfume allergy but maybe I'm kidding myself?

What is frustrating is that I was over 19 stones four years ago until I lost 9.5 stone. I felt brilliant for taking control of my health and hoped it would result in slowing the kidney decline down. Maybe it did a bit, who knows but it's clear there's nothing I can do to stop it. That is heartbreaking after working so hard. However, at least I'm now not too obese to receive a new kidney when the time comes.

So right now I'm really hacked off because my legs are like tree trunks because of water retention and stomach swollen. Every month after I ovulate, I retain water to the extent where I gain 10lb water which lasts the whole two weeks until my period. I could barely get my jeans done up today. I told my consultant about it and he prescribed Furosemide but told me only to use it when I have to. I've read the information leaflet and there's warnings about it damaging kidneys that are already impaired. So I just don't know whether to give them a go or just put up with it and not take the risk. I work so hard to keep my weight down as I love my food and gain weight so easily but such bloating for nearly half the month is so annoying.

Do you or does anyone else experience this? I'll probably put a separate post on about it but thought I'd ask.

It's brilliant to find people who understand this world of living in worry about the future.

Hope u are well..nice to hear from you..here we are at a similar postion with low gfrs..i agree it's a very disheartening conversation about the next stage but you just have to accept it.i hear youve suffered from gout..is that really painful?my uric acid levels are high but I never developed that condition.iv heard itchyness can be a problem with our low gfr..maybe try some oil to hydrate the skin..like coconut..i try to be natural where I can..

You should be so proud of the weight you have lost..it will be always beneficial to your general well being..iv realised that when you get to stage 4 the decline is going to happen..it goes down gradually which is hard to take..im trying to be more accepting but it does stress me out.

The water retention seems a lot.. so you get it more at the time of your period?I was on fruesmide long time ago when I started my initial treatment..i was taken off it..it is a diuretic..there are some holistic treatments you can look into with the supervision of your nephrolgist..teas,barley etc..can take out excess water but you should ask first.at my time of the month I feel really bad..abit bloated as well..regarding Fruesmide consult the Dr and ask how long he will have you on this tablet?

Just want to say well done..you are doing really well..as is everyone in this position..if you need any more info pls write in..

Hope you are ok.. many thanks for the the advice regarding diet..im looking into it and trying to improve the situation..im due some more blood tests..they will check my esr and vit d levels..the ache in my right side continued.. not sure if it's a sprain or something else..i shall update everyone..take care..